Grandpa keeps forgetting: How to explain dementia to kids

---

SINGAPORE - As a little girl, Alexis Kho used to spin her late grandfather around in circles whenever he sat in his wheelchair. She was good at making him laugh, although the two of them did not speak much.

She would also show him card tricks, tickle him from behind his car seat and shove the ends of her hair into his ears.

But Alexis, now 11, says she always knew that "grandpa used to be a different person and could remember things better".

Three months before she was born, her grandfather, Mr Eric Kho, suffered a second stroke. It semi-paralysed him and also caused vascular dementia, which took away a lot of his personality and memories.

In fact, he could never recall her name. It ended up becoming a game for Alexis, who would ask him, "Who am I?" (to which he would answer: "My niece") and "What's my name?" ("Xiao mei", which means little girl in Chinese).

Mr Kho died three years ago at the age of 75.

In his youth, he had been an avid sportsman, representing St Andrew's School in hockey and boxing. He could hit it off with any stranger on the street and later became a salesman, according to his son and Alexis' dad, Mr Daryl Kho, 42.

"He was like a human Waze or Google Maps - able to draw out, straight from memory, maps of all the roads he'd driven through, complete with traffic lights and landmarks," he says.

"It's a cruel irony that his strength - photographic memory - was exactly what dementia stole from him. And that he developed depression as he aged, becoming quiet and reclusive - the total opposite of the social butterfly he was in the past."

To help his only child know the "real" grandpa, he shared with Alexis as many stories as he could remember of his father, including the lessons he had imparted and how much the elder Kho meant to him.

He even wrote his debut children's fantasy novel Mist-Bound: How To Glue Back Grandpa, so that Alexis - the story's heroine - could "meet" her pre-dementia grandfather.

Mr Daryl Kho, who works in the regional television industry, says: "I think she took them to heart, as she was always caring and tender towards him - like pushing his wheelchair or helping him button up his shirt."

Dementia is set to affect more families.

In Singapore, the number of people living with dementia is forecast to grow to 240,000 by 2050, according to social service agency Dementia Singapore's website. The figure stood at 82,000 in 2018.

Worldwide, more than 55 million people suffer from the condition, which is caused by a variety of diseases and injuries that affect the brain, such as Alzheimer's or stroke.

That figure is set to rise to 78 million by 2030 and 139 million by 2050 in tandem with an ageing population, making it a global public health concern, said the World Health Organisation.

When dementia hits close to home, it can be confusing for children. A grandparent may seem a different person or even momentarily forget the child, for instance.

How should parents explain to their kids what dementia is doing to the grandparents?

 

Be truthful with your kids

Always allow your children to ask questions and listen to their concerns, experts tell The Straits Times.

There is no cure for dementia, but family members can play a part in helping to slow the deterioration of the condition and improve the senior's quality of life, says Mr Shem Yao, head of the charity Touch Parenting, which provides resources to strengthen parent-child relationships.

In addition, know that children are never too young to contribute towards caring for a grandparent.

"While younger children may lack the medical knowledge or social communication skills to speak to a person with dementia - especially depending on the stage of dementia - this can be an advantage.

"This lack may in turn show a lack of negative stigma towards dementia," says Mr Stanley Ho, director of advocacy and communications from Dementia Singapore.

Even if a beloved grandparent suddenly seems like a stranger, parents can remind kids that the senior is still a cherished family member.

"Let your children know that they should not shun their grandparent because of the condition," says Mr Yao.

 

If your kids are in pre-school and/or primary school:

Parents should be honest about what is happening to the grandparent, who may be acting strangely and becoming more forgetful.

Explain that the changed behaviours are due to dementia, a condition which affects the brain, says Mr Ho.

He also suggests reading together to help your young ones understand better. Check out picture books such as Still My Grandma by Veronique Van den Abeele and Claude K. Dubois, and Weeds In Nana's Garden by Kathryn Harrison.

There are good Singapore storybooks too, including Forget Not The-Forgetful-Him, published by Khoo Teck Puat Hospital in collaboration with Ngee Ann Polytechnic, as well as Mr Kho's Mist-Bound.

You can use role-play to teach children how to respond when their grandparent behaves differently.

Encourage them to be kind, calm and patient. Assure the kids that they can always turn to you if they have uncertainties, says Mr Yao.

To keep their grandparent mentally active, pre-schoolers can teach him or her a simple dance or song they learnt from school. They can also do colouring or fold clothes together.

Some elderly with dementia still retain long-term memories and skills, such as baking or cooking dishes that are family favourites.

Older children in primary school can learn such things from their grandparent, which also makes the elderly feel happy and valued.

 

If you have teenagers:

Introduce your teenage children to films such as The Father (2020), which tackle the real-life issue of dementia and caring for the elderly. Also, share news reports about the condition with them.

Where possible, involve them in the discussion of care plans for their grandparent with dementia.

They can also learn to support him or her by looking out for potential mood swing triggers, says Mr Ho.

For instance, your children can help to arrange items in positions that their grandparent is familiar with and tidy up the home to avoid clutter.

As a person with dementia may remember things from a long time ago but not a few minutes ago, teenagers can look through old photographs with their grandparent, reminiscing precious moments of yesteryears, says Mr Yao.

Also, engage the grandparent to play board games that encourage memory recall and logical thinking, such as Rummikub, Scrabble, crossword puzzles and jigsaw puzzles.

Go for walks together too, as exercise and fresh air can benefit one's mind and body.

Mr Ho encourages teenagers to go one step further by raising public awareness of the condition. Make good use of the social media, digital, creative arts and language skills that they learn in school or at home.

 

Myths about dementia

Myth 1: Dementia is a normal part of ageing

Dementia is a general term that describes a wide range of symptoms including memory loss and deteriorating cognitive skills. It causes progressive intellectual decline, leading to increasing difficulties in coping with everyday activities.

It mostly affects those aged 65 and over. This leads many to believe that it is an "old person" condition and is not serious, says Mr Stanley Ho, director of advocacy and communications from Dementia Singapore.

But, no, it is not part of normal ageing.

Dementia is a condition that can be brought on by cell damage in brain and nervous system, or other disorders including tumours, prolonged substance use, or even vitamin B12 deficiency.

 

Myth 2: Dementia happens only to the elderly

Dementia can occur even in people in their 30s and 40s. For diagnosis below the age of 65, this is known as young onset dementia.

According to the National Neuroscience Institute (NNI), more people in Singapore are being diagnosed with the condition. The number is set to grow, amid increasing awareness among the public and the medical community.

The number of new patients with young onset dementia seen at NNI totalled 245 in 2019, up from 228 in 2018, 184 in 2017 and 60 in 2013.

 

Myth 3: Dementia is hereditary

Dementia is not hereditary. In most cases, the likelihood of developing dementia will depend on age, lifestyle and chronic health issues such as high blood pressure.

Some risk factors of developing dementia can be reduced, by controlling hypertension, diabetes, diet, depression and the use of alcohol and tobacco, according to the World Health Organisation.

Certain types of dementia, such as vascular dementia, can develop after a stroke has blocked an artery in the brain.

But it is also important to note that not all vascular dementia cases are caused by strokes, says Mr Ho, and it is not always possible to pinpoint the disease's cause.

 

Myth 4: Dementia will only get worse

There is no cure for dementia, but through medication and making adjustments to lifestyle, early symptoms can be better managed, says Mr Shem Yao, head of social services group Touch Parenting.

This is why it is crucial for individuals to stay socially engaged and take charge of their physical and mental health.

 

Myth 5: People with dementia cannot be on their own or live independently

It has been seen from an increasing number of seniors facing early to moderate dementia that they are able to manage independently and stay safe even when living alone - with the support of family, friends and help agencies, says Mr Yao. Many continue to contribute positively to family and community.

 

Myth 6: People who have dementia are just "crazy" and are unaware of their surroundings

That people with dementia are "crazy", "demented", "senile" or an "empty shell" is possibly the most troubling and harmful belief, says Mr Ho.

A person with dementia may portray certain challenging or aggressive behaviour, which may be illogical to others.

In reality, this is most commonly due to the people with dementia being unable to accurately express their feelings, thoughts and wants. This leads to frustration or aggression, which manifests itself as more frequent tantrums, verbal or physical abuse, self-isolation or other challenging behaviour.

Those with dementia can very well be aware of their family members and surrounding environment, but are just unable to communicate as effectively as before.

Mr Ho says there is a high level of social stigma on people with dementia in Singapore. People are quick to judge when they witness such symptoms and behaviour in public.

This is also compounded by the fact that dementia is largely an invisible condition and you may not be able to tell right away if someone is living with it.

Mr Ho urges people to take a more empathetic approach towards people with dementia. A start would be to use the right terms when talking about the condition or when speaking to people with dementia, caregivers and family members.

Dementia Singapore shares language guidelines to convey dignity to those living with the condition (dementia.org.sg/wordshurt).

 

Myth 7: Only healthcare professionals can help someone with dementia

Healthcare providers play an important role in helping patients find specialised care, support, counselling and information.

However, family members and friends can also learn to understand dementia-affected behaviour, so they can better care for their loved ones, says Mr Yao.

There are programmes and services to equip caregivers with the skills, knowledge and confidence.

The community can also step in to support people with dementia and their caregivers to build a more inclusive and dementia-friendly community.

 

Fantasy novel to help child know the "real" grandpa

How do you introduce to your kid the grandfather whom she never truly got to know?

For Mr Daryl Kho, 42, he regaled his daughter Alexis with more than memories of grandpa Eric Kho. He wrote a fantasy adventure to give her "a glimpse of the jovial father that I knew, before he became the sick grandpa that she knew".

Mr Eric Kho's "real" personality was eroded by dementia three months before Alexis was born in 2009. He lived with the condition for nine years before he died in 2018.

Mr Daryl Kho's debut novel Mist-Bound: How To Glue Back Grandpa, published by Penguin Random House South-east Asia, is available at major bookstores.

"I remember running downstairs, right after the idea struck, and telling my pa that I was going to write a book about his granddaughter going on a quest to gather the ingredients to make a remedy called Memory Glue, which could bring all his memories back," says Mr Kho, who works in the regional television industry.

"He was still partially lucid then and I remember him chuckling and then suggesting that there should be an elephant in the story."

Why? "Because elephants never forget."

That was how the Baku, a mythical Japanese dream-eater that has the head of an elephant but the body of a tiger, made it into his book - along with his father's quip. He also named the story's heroine after his daughter.

Mr Kho says: "When I was in primary school, my father and I used to go for after-dinner walks together with my pet dog.

"Those walks were something I so wish my daughter could have had with her grandpa and precisely why my story opens that way - with the two of them on a walk in a forest."

The story includes many pieces of his father's advice to him, such as "Never be arrogant: The people you pass on your way up in life are the same people you'll meet on your way down".

Mr Kho's mother, who was his father's main caregiver, plays a key character in the book too, as he wanted Alexis to see grandma's strength, resilience and devotion.

He hopes his fun fantasy novel would introduce the concept of dementia to young readers and serve as a launchpad for deeper discussions within families.

To caregivers of loved ones with dementia, he says: "Please don't do it alone. Remember to seek help, including through organisations like Dementia Singapore or Touch Community Services."

He also stresses the importance of self-care for caregivers.

"Dementia daycare was such a godsend for both my parents: Pa, for mental and social stimulation beyond being glued all day to a TV set; and for mum, time off to work, to run errands and basically to have a life of her own as well."

Some resources he found useful were Hack Care (hackcare.org), a social initiative by the Lien Foundation with tips on "dementia-proofing" the home, and food delivery services such as Touch's Meals-on-Wheels programme.

 

Source: The Straits Times © Singapore Press Holdings Limited. Reproduced with permission.

---

ALL views, content, information and/or materials expressed / presented by any third party apart from Council For Third Age, belong strictly to such third party. Any such third party views, content, information and/or materials provided herein are for convenience and/or general information purposes only. Council For Third Age shall not be responsible nor liable for any injury, loss or damage whatsoever arising directly or indirectly howsoever in connection with or as a result of any person accessing or acting on any such views, content, information and/or materials. Such third party views, content, information and/or materials do not imply and shall not be construed as a representation, warranty, endorsement and/or verification by Council For Third Age in respect of such views, content, information and/or materials.